Author, Speaker, Autism Expert

Back to School : how to prepare your teen for a new school year

By Chantal Sicile-Kira |  September 2nd, 2010 |  Print Print  | 

It’s that time of the year again – school is starting up again soon, along with our hopes and expectations for a positive learning experience for our teens. Some maybe returning to the same school; others may be moving from middle school up to high school, or changing from high school to a transition program; others may only be changing classrooms or teachers. Whatever the situation, any type of transition or change can be stressful for a teen on the spectrum. The start of a new school year can also be stressful for parents and teachers.

I first posted this article on the Examiner.com last August (2009), but it is still useful information so I am reposting now.

On August 15th,2009, I presented at the annual “Back to School”  Autism / Asperger conference in Pasadena and had the opportunity to refresh my memory on some good readiness skills for the start of the new school year. A2Z Educational Advocates based in Pacific Palisades had some good tips to share in a “Back to School Guide” they were handing out. Following are some tips from both the “Back to School Guide” and from my book Adolescents on the Autism Spectrum to help the transition go smoothly for your teen or student:

  • If  your student is moving to a new school or classroom, take photos or videos of the new environment, including the areas he/she will be walking through. If possible, take the teen to the new location before school starts and practice walking around the empty campus. Have him /her notice some visual landmarks he/she  will be able to see when the campus is full of students, and explain to him/her how to use these as points of references when walking from one place to another.
  • Prime your teen by talking to him/her  about the upcoming school year, the teacher and expectations, as well as any fears or concerns your teen has. Creating a photo album together or writing social stories can be very helpful. Even if your teen does not have good communication skills or is non-verbal, he/she can  learn to  understand and make the connection, so it is worth the effort to take the extra time to do this. Going over the appropriate behaviors and social interaction for the school environment can also be helpful. Many students find having a set of ‘rules’  for school behavior helpful. Focus on the positive!
  • Help your teen get organized to prepare for the school year.
  1. Use color-coded folders to organize the work for the different classes.
  2. Get a planner for your teen. Many schools have a homework planner, and your teen can use this to keep track of homework assignments. Show him/her  how to write his assignments in the planner and reinforce him/her  for doing so through out the school year.
  3. Designate a spot in your teen’s backpack for forms, notes and so on that come home from school, and make sure your teen and the school staff know where that is.
  4. If your teen is fully included in a school that follows block scheduling such as in some North San Diego County high schools (one day is periods 1,3,5; the next day is periods 2,4,6) you may wish to consider having two separate backpacks for the two different block days days.
  5. If your teen needs assistance to organize himself and stay organized (as mentioned above), his / her IEP may need to include accommodations, strategies, and goals related to learning these skills. Being able to get and stay organized is an important life skill everyone needs to learn

In my next column, tips on how to make the transition back to school easier for parents and teachers will be discussed.

Liberté, égalité, fraternité – Happy Bastille Day!

By Chantal Sicile-Kira |  July 14th, 2010 |  Print Print  | 

In honor of Bastille Day, I am posting my Huffington Post piece on Autism and Education in France published on June 14, 2010 (one month ago).   France is moving slowly, but at least forward, to have Liberté, égalité, fraternité for children and adults  with autism in France.

French flag - le bleu, blanc, rouge

Photo from www.freefoto.com

Recently I was invited to Paris to present at a prestigious international colloquium on autism and education, which was organized by the INS HEA, the French Ministry of Education’s training institute for special education teachers. Seventeen years earlier, I had left France because in those days, children with autism did not have the right to an education, and my son, Jeremy, was severely impacted by autism.

It was an emotional moment for me, standing there, addressing 500 attendees in a lecture hall of the Universite Paris Descatres in Bolulogne – Billancourt, explaining my son’s educational experience in the United States, where all children have the right to a free and appropriate education under IDEA.

In 1993, my family left France, where we had been living since 1981. Both Jeremy and his sister, Rebecca (who is neurotypical), were born in Paris at the time when children with autism were considered mentally ill, not developmentally disabled. They had no right to an education. Instead, they were enrolled in day programs on hospital sites, where they were treated with psychoanalysis. Parents had no right to visit the day program, nor did they receive any communication about what went on during the hours their child spent there.

When Jeremy showed autistic tendencies, I was told by the powers that be to take him to see a psychoanalyst. The psychoanalyst concluded that Jeremy was autistic because he suffered separation issues from breast-feeding. This the analyst gleaned from watching him spin round objects (which reminded him of his mother’s breasts) and chase after one that he had “lost” when it fell and rolled under a piece of furniture.

The French genetic specialist who handed me my son’s diagnosis, also handed me some advice. She told me to look for and find a good institution for Jeremy. I have — it’s called public school. On June 18th, both Jeremy and Rebecca will be graduating from high school. Jeremy will have taken seven years to do so, in comparison to Rebecca’s four. I am equally proud of both of them.

I am not sharing this information to knock the French; I have heard similar stories in the UK and in the US: Parents seeking help were often blamed for their child’s autism and were given no hope and no answers. The big difference however, is that back then there were no French laws allowing children with autism to be educated; and now there are.

Yes, the laws have changed in France, and now things are beginning to move slowly but surely. Not fast enough for all the families in need of an education for their child, but at least it is moving forward.

During the two day colloquium, there were presentations by teachers and other educators, parents, principals from different schools and different regions of France, sharing their successful experiences of how they were educating students with autism in their schools and classrooms. It was wonderful to hear the passion these people shared. We also heard presenters from Italy, Belgium, Sweden, Canada and Brazil. It was apparent that no matter what country or region, student success was based on the same foundation in all countries: parents who fight for the rights of their children, administrators who believe in these students and support their placement, trained staff who are enthusiastic and creative about teaching, good teamwork and communication between the school and the parents, and clear goals that are shared by all.

After my presentation, a gentleman came up to me and said,

“Madame, do you remember me? Do the words Notre Ecole mean anything to you? I was the director of that school.”

I was surprised, and then I couldn’t help but laugh at the irony of it all. Notre Ecole was the only institution in Paris at the time 19 years ago that were accepting children with autism and were teaching them (using TEACCH), as opposed to just providing psychoanalysis. I had hoped to get Jeremy into Notre Ecole, but it had not been possible. Perhaps, if he had gotten into Notre Ecole, I would never have left France. I would not have written the books that I have, as it was my frustration that inspired me to write books in order to provide hope and information to save other parents a little grief. My son certainly would not be graduating from high school in a few days, if he had gotten into that school.

Things happen for a reason.

Jeremy Sicile-Kira’s Commencement Speech

By Chantal Sicile-Kira |  July 13th, 2010 |  Print Print  | 

Jeremy graduated from high school with a GPA of 3.75 on June 18, 2010.
He auditioned for, and was chosen to give  a commencement speech.

SOLANA BEACH: Nonverbal autistic student to give commencement address

By Chantal Sicile-Kira |  June 17th, 2010 |  Print Print  | 

Torrey Pines’ Jeremy Sicile-Kira clears big hurdles on road to graduation

Published on the front page of The North County Times

By CHRISTINA LOPEZ

Most people would consider scaling Mount Everest or winning a Nobel Peace Prize an impressive feat, but Jeremy Sicile-Kira —- who was diagnosed at age 3 with severe autism —- is scaling heights that are equally impressive.

On Friday, the 21-year-old is set to become the first nonverbal autistic student to receive a full academic diploma from Torrey Pines High School, San Dieguito Union School District officials said.

He will also give the school’s commencement address, which has been prerecorded using a computer voice generator that translated his typed speech into an audio file burned onto a CD.

Sicile-Kira communicates by using what is known as Rapid Prompting Method, a system that requires intense focus and participation by aides or other caregivers to keep him on task.

In Sicile-Kira’s case, his mother, Chantal, and aides use prompts —- snapping their fingers or pointing at familiar objects —- as they ask questions.

He then points with one finger to a letter board or keyboard to spell out his answers.

“My mom tells me that no one is better than anyone else,” Sicile-Kira said in an interview last week, using his laminated keyboard, and assisted by his mother. “We know that we should try our best.”

Autism is a range of complex neurological disorders characterized by social impairment, communication difficulties and repetitive behavior patterns, according to the National Institutes of Health.

Many people with autism are diagnosed as toddlers. In severe cases, children with autism appear to be locked in their own worlds, unable to communicate.

Chantal Sicile-Kira said her son began showing signs of autism when he was 9 months old.

“He didn’t move. He didn’t develop right away,” she said. “I had to fight to find out about Jeremy’s condition.”

In the years since, she said, her son has gone through home schooling, special education and many different therapies, but couldn’t spell out words until he was 14 years old and began learning RPM.

“I really believe in the impossible,” she said.

At Friday’s commencement ceremony, Sicile-Kira —- decked out in cap and gown —- will deliver his speech to 619 fellow graduates.

His sister, Rebecca, 18, is graduating earlier Friday from Canyon Crest Academy and will be in the audience during the 4 p.m. Torrey Pines ceremony.

“The staff and the students know him so well —- they’ll be encouraging him,” she said about her brother’s participation in the event. “I think people will be proud of him when he delivers the speech.”

Bruce Cochrane, executive director of student services for the San Dieguito Union High School District, has worked with Sicile-Kira for the past three years and is just one of the many people who helped him reach this goal.

“Jeremy is an incredible young man,” Cochrane said. “I think as he has matured, his skills and talent have flourished. (He) has been able to communicate at a greater level and really show people his intelligence.”

Sicile-Kira is able to earn his diploma under a state law that gives special education students until age 22 to do so.

He completed the necessary course work and passed the California Exit Exam on his first try.

Sicile-Kira’s mother said she never believed the naysayers who told her when the boy was young that he would have few options in life.

“Once they diagnosed him, I was told to find him a good institution,” she said. “And I have —- it’s called college.”

In the fall, Sicile-Kira will enroll at MiraCosta College in Oceanside, with an interest in journalism; he hopes to write for the college newspaper.

Until then, his summer plans include financing a two-week trip to New York City. He also plans to publish his first book and establish an online newsletter geared toward helping families understand children with disabilities such as autism.

“I think I greatly inspire others by my ability to continue to learn and not give up on my dreams,” he said.

An author, speaker and autism expert, Chantal Sicile-Kira is working on her fourth book on autism and says she has learned much from her son in the years since his diagnosis.

“We raised him to never feel sorry for himself,” Chantal Sicile-Kira said. “He’s a big inspiration to me. He has taught me patience and has actually made me into a stronger person.”

The message Sicile-Kira wants to convey to the class of 2010 is to focus on a goal and never give up on yourself.

“When I first arrived, I had no way to communicate,” he said. “But over the years, I learned how to spell, and my life changed from one of loneliness to one of having great teachers and an education.”

Inspirational autistic TPHS student graduates, will deliver a commencement speech

By Chantal Sicile-Kira |  June 10th, 2010 |  Print Print  | 

Carmel Valley News, June 10, 2010

Inspirational autistic TPHS student graduates, will deliver a commencement speech

By Karen Billing

Jeremy Sicile-Kira is autistic and cannot speak, but that does not mean he has nothing to say. After seven years at Torrey Pines High School, he has earned his high school diploma and will deliver a commencement speech to his classmates through voice-assisted technology at the June 18 graduation ceremony.

“I am nervous but very touched that I am giving a speech,” said Jeremy, using a letter board to spell out his words. “I want to tell them never give up on your dreams.”

To graduate high school Jeremy, 21, has taken units in mainstream general education classes as well as in his severely handicapped classes with Allen Gustafson, whom Jeremy said is the “best teacher.” He does all the same work as his regular education peers, he just gets more time to do it. He passed his California High School Exit Exam on the first try and will attend MiraCosta College in the fall to study communications.

Next week he will graduate on the same day as his sister, Rebecca, a senior at Canyon Crest Academy.

“I was pretty amazed,” said proud mom Chantal, who never even expected it would be possible for Jeremy to earn his diploma, let alone with a 3.5 GPA.

Along the autism spectrum, every child’s symptoms are different. Although Jeremy can say a few words, he has never been able to speak. In a speech written for an autism conference, Jeremy explained how his autism affected his vision, hearing and motor skills.

He said he had to learn how to hear, how to know which noise to pay attention to and distinguish when someone was speaking to him. He had to learn how to focus to be able to see.

“If I don’t concentrate, the world seems surreal,” Jeremy said.

He encourages fellow autistic children to be patient with treatment and learning methods and to learn to read because “when you can read the world is yours.” He tells them not to worry about what they look like when they are “stimming,” a method of using repetitive motion to keep focused. It is more important to be present than to worry about what other people see, he said.

Jeremy needs support and help from his family and teachers to accomplish schoolwork, but he has never needed to be motivated to learn. He thinks knowledge is important; he loves math even though it is challenging to have to spell out how to solve each problem and he especially loves to write.

“My mom is really nice because she made me realize I could learn,” Jeremy said.

Gustafson, Jeremy’s teacher for four years, turned to Jeremy’s mother Chantal to find out what she was doing at home that could help in the classroom.

“I just kept on giving him words of encouragement and kept on sticking to the plan,” said Gustafston, who left Torrey Pines in 2008 for Eastlake High.

He said sometimes there were hard days, sometimes the methods worked and sometimes they didn’t. But Jeremy wanted to learn as much as possible.

“It was great for him to believe in himself and that education is a value and something to work at…He wanted to show people he wasn’t dumb, that he knew just as much as the person sitting next to him in high school.

“I’m immensely proud of him,” Gustafson said.

Jeremy stresses there is hope in autism, but that nothing will matter if the person doesn’t believe in themselves.

Spreading his inspiring message of hope was only possible after Jeremy found his voice.

To communicate, Jeremy uses a litewriter. He types in sentences and the machine verbalizes his words for him. Scattered throughout the house and in his backpack for school are letter boards which Jeremy uses to spell out words to his family and friends.

To present his commencement speech he will use his laptop’s TextAloud software which takes his writing and converts it into speech—he uses the same program to speak at schools and conventions.

Jeremy has really only been able to communicate with his classmates for the last two years with the litewriter and he said it has changed his life. Before, he has said he felt like he was “imprisoned in darkness.” Now he has friends and like any high school student, swaps messages on Facebook.

The friendships he was able to make were very meaningful and he said what he will miss most about Torrey Pines is “the way I was accepted by everyone.”

Jeremy’s message to others is always to follow their dreams and he’s already accomplished one of his dreams: to earn his diploma. His second big dream is “to make money.”

As he loves to write, he is working on getting a book published and wants to start an online newsletter to “create awareness and answer questions” on autism. To make a living, he will look for sponsors and advertisers on his site and is working on getting more speaking engagements to share his words.

Most of Jeremy’s writings always lead toward the inspirational and one of his personal heroes is Helen Keller.

“When Helen Keller grew up she graduated from college, became an author and an advocate for people with disabilities,” he wrote. “I hope to follow in her footsteps.”

“THE STATE OF THINGS” North Carolina Public Radio station WUNC

By Chantal Sicile-Kira |  April 22nd, 2010 |  Print Print  | 

Click here for a link to the radio show

The program is “The State of Things” on North Carolina Public Radio station WUNC.  Longtime NPR correspondent Frank Stasio hosts the program, which  this time  focused on autism.

The way Franc Stasio introduced me is a description I think describes what all autism moms and dads tend to be – strategists:

“… Jeremy is almost 22 now and  he is thriving thanks to an army of experts whose chief strategist and leader of the troops is his mother.” Frank Stasio, host of radio show ‘The State of Things” on WUNC, North Carolina Public Radio, April 2010.

I was on a panel that will include  Autism Society of North Carolina  spokesperson David Laxton; and a representative of the North Carolina TEACCH program, and Daniel Coulter.  TEACCH stands for “Treatment and Education of Autistic and related Communication Handicapped Children” and is associated with the North Carolina School of Medicine.

Jeremy Using an iPad

By Chantal Sicile-Kira |  April 20th, 2010 |  Print Print  | 

Jeremy has been trying to master turning the pages of a book. He loves to read, and he loves learning, but getting all his motor planning / sensory processing to move the pages of a book are a bit much.   Here you can see how with the use of an iPad he learned quickly how to turn the pages of a book  on the iPad. Great use of technology!

First he learned to slide his finger across the screen:

Then he learned to slide his finger to turn the pages:

I hope this encourages others!

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How to Teach a Child or Teen with Autism the Concept of Waiting

By Chantal Sicile-Kira |  April 20th, 2010 |  Print Print  | 

There are a few things in life that are certain: paying taxes, death and waiting. No matter who you are, part of your life will be spent waiting. Unfortunately, the “waiting” concept is not one that is picked up by osmosis for many children  on the spectrum. Hopefully, they will have learned this concept  by the time they are teens, but I’m still including it in this column because it is a necessary life skill everyone needs to learn – on and off the spectrum. We all have to wait in line at the grocery store, wait at the doctors office, wait for a turn on our favorite ride at Disneyland, wait at the restaurant for our food. Children also have to learn how to wait  at holiday events,  when traveling, at home for things they can’t have right away or to go out for a ride in the car. As children grow into teens and become more responsible for their behavior, waiting is definitely a skill they will be expected to use in the community.

Teaching the concept of waiting

waiting

Here’s one way of teaching the concept of waiting:

  • Make a nice- sized (4×4 or bigger) picture icon that has a figure sitting  in a chair, and the face of a clock on it. Put it somewhere convenient and noticeable, such as the refrigerator.
  • Glue a piece of velcro  on the big icon for putting a smaller  icon of requested item on it.
  • Have a timer available.
  • Have small icons of the child’s favorite items that he likes to request.
  • Have those items (food or toys) within his eyesight but out of his reach (but easily within yours).
  • When child asks for item out of reach, show him the corresponding icon, place it on the bigger waiting icon, and say “we are waiting” and set timer for whatever his capability for waiting  is at this point (10 seconds, 30 seconds, 1 minute).
  • As soon as the timer rings, give him immediately the requested item. Tell him “We are finished waiting.”
  • Do this many times  whenever the opportunity arises and extend the amount of time until the child can wait longer and longer.

Each child is different in how long this will take or for how long he can learn to wait (and this will change as well over time).  Eventually when he is asking for a ride in the car and you can’t go right away, you can tell him “Not now, in 10 more minutes your sister will be ready. We are waiting,” and he will get the idea that he may not get what he wants now, but he will get what he wants eventually. This will lessen his frustration, and subsequently, yours.

The Ultimate Sandwich Generation

By Chantal Sicile-Kira |  April 13th, 2010 |  Print Print  | 

This article first appeared in the April 2010 edition of Spectrum Magazine.

When my father passed away in 2007, we moved my mom to a skilled nursing facility near our home. Caring for my son Jeremy and caring for my mom—one affected by autism and the other by Parkinson’s—I’m continually reminded how similar their brain processing challenges are. One glaring difference, however, is that my son is gaining in skills (albeit slowly), while my mother is losing them.
As an older parent (I won’t say how old – a lady is entitled to her secrets), I’m now sandwiched between caring for my children, and caring for my elderly mother. The balance of time has shifted, and now it is my turn to look after Maman who once looked after me. In the trunk of my car I carry a change of clothes for my son and adult diapers for my mom.

Both Jeremy and Maman require high levels of support and are nearly the same in terms of stress, worry, and time commitment. Soon after moving my mom down here, I was overseeing my mom’s caretakers, as well as my son’s in-home support staff. That pile of insurance papers I already hated filling out for my son looked small in comparison with all the paperwork following my dad’s death and all that needed to be done for Maman. The number of phone calls I had to make to health professionals, therapists and agencies suddenly quadrupled. And then there were the Interdisciplinary Care Plan meetings in regards to Maman and the Individualized Educational Program meetings for Jeremy.

Sometimes, it feels like I’m not doing right by either of them. Meanwhile, I still have my work to do, with deadlines looming. “Squeeze as much as you can into a 24-hour day” seems to be the mantra around here. Because of course there are the financial worries that having a “Jeremy” entails.

The other day I took Jeremy to visit my mom. When we got there, Maman was sitting in the communal living room, where there is not much living going on. Maman was slumped in her wheelchair, staring blankly at the TV screen. We walked in and greeted her, but she did not respond. Maman was ignoring us.
“Maman, what’s going on?” I asked.
“I’m mad because you didn’t come yesterday,” she replied, refusing to look at me.

The day before, Jeremy’s tutor had called in sick, so I’d had to stay home and supervise Jeremy getting his homework done. Maman doesn’t get that sometimes I have to choose between her needs and my children’s needs. Tough situation to be in, but it is the reality of those of us in the sandwich generation.

I apologized for my absence, but Maman was still pouting. “And Monica didn’t come today.” she stated. Monica is my sister in L.A., a two-hour car ride away.
“Maman, Monica is coming tomorrow, Friday. Today is Thursday. But I’m here now, do you want to play cards with me?” I asked. Maman loves to play cards.
“Non,” she replied.
“Fine, then I’m going to play a game of solitaire by myself.” I pulled out the cards and set up the game to play. Maman didn’t react at first, but after I played a few rounds, she slowly moved her hand, picked up a card and moved it to where it belonged. Good, I thought, I got her interested.

Meanwhile, Jeremy sat at the table, quietly stimming with one of Maman’s little stuffed animals. She keeps them in a bag hanging off her wheelchair, along with the playing cards and a book. As he was stimming, he rocked, and his chair started to slide backwards. Not a good thing considering that very old people in wheelchairs were right behind him. I asked him to budge, but he ignored me, so I got up and pushed his chair back in closer to the table. I sat back down, and Maman was back to staring at the TV screen. I tried to get both Maman and Jeremy interested in the card game, but nothing doing. I pulled out one of Maman’s Paris Match magazines—they both like to read those—but they just sat there unresponsive, each in their own little world. I continued my game of solitaire. There I was with two of my closest family members, and I had never
felt so alone.

Back home, there was a reminder email from Rebecca’s high school about an upcoming meeting. This is Rebecca’s senior year, and there are all these things I am supposed to be doing in order to help her choose, apply, get into, and pay for college. Things are much more complicated now than when I was in high school. Although I know all the ins and outs of special education, I am at a loss when it comes to college prep, and I feel like I am already behind in helping my daughter to navigate through all that she should be doing. Gosh, have I been spending so much time taking care of Maman and Jeremy that I have seriously messed up my daughter’s future? Something else to worry about, and now I will have to skip a visit with Maman to attend this meeting. It’s tough having to choose between being there for your child and being there for your parent.

Every one of these people whom I love and cherish requires and needs my attention. Sometimes I feel overwhelmed and I think, “How did I get here? How did I become the primary caretaker for so many needy people?” And of course just asking the questions makes me feel guilty.

Then it hits me. I don’t want to rush through any of this.  I want to savor the next few years. Spending time with Rebecca is a joy; I don’t want to miss a minute of my teenage girl’s transformation into a young woman. She will be out of the nest before I know it. Maman has only a few years left, and I want to be there for her the way she was for me when I was little. Jeremy is evolving into adulthood, and it is gratifying to see how mature he is becoming. I don’t want to miss a minute of any of it.
This sandwich generation stuff is tough. But soon, my husband and I will be all alone and I’m not sure I’m ready for that. I’m lucky to have all these people to care for, needing me, surrounding me. My plate is very full, and yet that is what gives my life the richness and flavor that makes it worth living.

Temple Grandin and Jeremy Sicile-Kira to Keynote on-line Autism Conference

By Chantal Sicile-Kira |  April 7th, 2010 |  Print Print  | 

No-Cost Virtual  conference and new book highlight Autism Awareness month.

In honor of Autism Awareness month, momsfightingautism.com is offering a free virtual conference with 17 different presenters over two days on Saturday, April 10th and Sunday 11th from 8:00 to 5:00 PST.

Temple Grandin, PH.D., subject of the recent HBO movie: Temple Grandin starring Claire Danes, will be the keynote speaker on Saturday April 10 at 8:00 am PST. Dr. Grandin is a designer of livestock handling facilities, Associate Professor of Animal Science at Colorado State University and a bestselling author (Thinking in Pictures). Dr. Gandin will be discussing Teaching Through Specific Examples, and will also discuss the Importance of Sensory Processing Disorder and it’s place in the DSM V which is currently being updated.

Temple Grandin and Chantal Sicile-kira

Acknowledging that autism is a spectrum with different abilities and challenges, the keynote on Sunday April 11 at 8:00 am PST will be given by Jeremy Sicile-Kira who was highlighted in the MTV award-winning True Life episode, “I Have Autism.” Jeremy will present on Learning With Autism: A Personal Viewpoint using power point with voice output. “Jeremy has experienced home schooling, special education and inclusion, and many types of therapies in California, France and the UK. It’s not often we get to hear from someone as impacted as Jeremy about what it is like to be on the receiving end of therapies and treatments,” explained Chantal Sicile-Kira, autism advocate and award-winning author who will be moderating both keynote presentations. Her latest book, 41 Things to Know About Autism, has just been published by Turner Publishing. Read More »